What’s it like having a child with type 1 diabetes? I suppose in my case it might be a bit different than others because I also have type 1. But we’ll not focus on that now. I’d like to talk about the daily routine and all the emotions.
I skipped over a lot of details in my previous post and I’d like to talk a little bit more about our time in the ER early Saturday morning before we continue. I don’t have a clear recollection. I was up all night with Bodie. The one thing I clearly remember is my reaction when I heard what his sugar count was. The first blood sugar test was with a glucometer. In most cases when the sugar is over 600 is just reads “Hi”. Blood needs to be tested in a lab to get a better reading. I heard the nurse say, “It’s over 600.” Immediately I felt weak. I tried to explain it away the best I could, but nothing made sense. I broke out in a sweat and had to sit down. Time stood still. I looked at my boy in disbelief. There was no way I passed this on to him. After a bit of time I called my wife to tell her the diagnosis. I don’t remember the conversation, but I remember her crying just like I did earlier. All I could say was “It will be ok. We’ll get through this.” I believed what I told her. The difficult part was thinking what’s life going to be like now?
What I’m about to say, I mean in no negative way whatsoever. We have four kids. Our life is crazy right now. It’s exhausting just raising four healthy kids. Now what? Can we even do this?
Let’s get to the point of this article now. What’s it like having a child with type 1 diabetes?
Life is different. There are some changes. There are extra concerns. The biggest change is our eating habits. We already eat healthy, that’s not an issue. My wife cooks all the time. She’s always looking for ways to make every meal better for us. What has changed with our eating is how much food Bodie can have. We measure and weigh everything to get an accurate carbohydrate count. On days he’s extra hungry, we look for protein rich foods with less carbs. On days he’s not so hungry, we look for foods that will stick with him. We’re thinking more about the types of food he can have.
Snacks. He’s limited to three small snacks a day. One in the morning, one in the afternoon and one at bedtime. Each snack is limited to 15 – 30 carbs. So, if he chooses something fun, it will be a small amount of whatever he chooses. He has been pretty good at this. He usually wants cheese and crackers, cashews or sunflower seeds and a half an apple. This adds up to about 25 carbs but it’s a lot of food. And it keeps him satisfied.
With all this food come sugar checking and insulin doses. We check his sugar with each meal, mid-morning and bedtime. We count his mealtime carbs to determine how much insulin he’ll need. Currently we dose 1 unit of insulin per each 15 gr of carbs. And we check his sugar before each meal to determine if a correction if required. If his count is above 150, he needs an extra 0.5 unit per every 50 count over. It’s a good thing we learned math in school. Let me give you an example. Let’s say his meal is 58 carbs and his blood sugar is 212. Here’s how we calculate the insulin dose:
58/15 = 3.866. We round that up to 4 units. This covers his meal.
His sugar is 212, which is above 150. We look at his correction. We add 0.5 unit for each 50 count over 150. 212 is 62 over. We would add 1 unit to correct his high sugar.
He gets a total of five units.
This is with every meal. No exceptions. It’s become a science and has forced us to add about 10 to 15 minutes of mealtime prep
Moving on but still staying with food. Certain foods have always affected Bodie in different ways. Foods with high sugar, certain food coloring and msg had a negative impact such as him being grumpy, aggressive, mean and causing him to not sleep very well. We were already paying attention to how food affects his body. Now we also pay attention to how food affects his blood sugar. For example, one day he had two slices of pizza. Two hours after he ate, his sugar was really high. Same with pancakes. It causes a higher than usual sugar count. We need to keep that in mind and serve those foods not as often. For breakfast, instead of eggs, sausage, pancakes and fruit, we would substitute toast with jelly for a pancake. Toast with jelly doesn’t have the same outcome as a pancake.
Insulin. I’ve been on insulin for over twenty years. I take two, sometimes three shots a day. I hated needles when I first started, and I still do. It’s not an enjoyable experience. Giving Bodie insulin probably pains me more then it would somebody else. I don’t know? Bodie does do better than I expected with getting shots. But he does have his days. This past Saturday evening he was having an especially hard time. When I gave him his bedtime dose, he cried and cried. It broke my heart and brought tears to my eyes, as well. I can understand what it feels like for the needle to hit a sensitive spot. The pain is real. It hurts and sometimes makes you angry that this is the rest of your life. It can get you depressed.
We also have doctor visits and blood tests. For the next few months, he’ll have an appointment once a month. And after things settle down and he’s under control, it will be once every three months. We live in a remote area of Pennsylvania. There aren’t specialists close by. I think any good parent will want the best for their children. We want the best for ours. We’re staying with his doctor in Hershey. It’s a two-hour drive. We’ll have to stop for food and gas. We’ll have tolls to pay. It makes for a long and expensive day.
And, of course there will be a lot of prescriptions to fill and pick up. More running around.
It wasn’t intentional for this to move in a negative way. It’s just the reality of having a lifelong disease and managing it. It is a lot of work. Let me repeat, it is a LOT of work. With all that work, when the results are bad, it brings you down emotionally and physically. But when the results are good, the work isn’t that big of a deal. Managing diabetes is a roller coaster of ups and downs. You do the best you can and look for the positives.
I’m not sure if I covered everything I wanted to. If this article seems scatterbrained and a roller coaster of emotions, see the above paragraph.
I want my writing to be real. I want people to see what real life is. There are good days and there are bad days. I wouldn’t say the past few weeks have been bad days, but they’ve been a challenge. They have been hard. My wife and I are drained, exhausted. We’re running on fumes. But we’re not giving up because we have hope for the future. And Bodie is getting better. His blood sugar is getting close to where it needs to be. He’s back to his normal self, which is crazy and silly.
My hope is to continue writing about this journey. Here is a link to my first article: https://steemit.com/blog/@myworldview/a-medical-emergency
Let me leave you with another positive. Try to be happy in whatever situation you’re in.
That is all!